The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Think about bidding on my book. All proceeds go to MCWPA, the ME/CFS Worldwide Patient Alliance, dedicated to fighting for research money to be allocated for finding the cause of Chronic Fatigue Syndrome. I'll sign the book with a personal message for the winning bidder.

Dr. Kenny De Meirleir of the Brussels Free University (VUB) has announced that he has successfully developed a diagnostic test for ME/CFS. The Myalgic Encephalopathy Association Belgium (MEAB) estimates there are between 30,000 to 40,000 people in Belgium with ME/CFS.

Since 2002, the Flemish government has invested over €10 million in five "reference centres" across the region in Leuven, Antwerp, Ghent and Brussels for the diagnosis and treatment for ME/CFS but offer only cognitive behavioural therapy and physical rehabilitation.

"These people have been mistreated for years," Dr De Meirleir says. "CFS was treated as a psychosomatic complaint. But someone who runs 10 metres after a bus and then has to spend a week in bed recovering has a serious medical problem."

The test, manufactured by Protea Biopharma, in which Dr De Meirleir is a partner, detects the presence of hydrogen sulphide (H2S), which is produced in the intestines when bacteria come in contact with heavy metals. People with ME/ CFS have been shown to have higher concentrations of intestinal bacteria than normal, which leads to higher levels of H2S.

H2S is a gas present in minuscule concentrations in normal people but at toxic levels in ME/CFS patients. The reasons for overproduction of bacteria can range from lactose intolerance to viral infection to stress.

According to the draft of a journal article soon to be published by Dr. De Meirleir and his team, H2S causes intolerance to light and noise, a depressed immune system and low white blood cell count. It also leads to retention of mercury by the body, which in turn produces cell death and damage to energy metabolism. The biggest effects, though, are produced on the central nervous system, explaining the main symptoms of ME/CFS.

"There's still a great deal of work to be done to find a cure" Dr. De Meirleir told Radio 1 listeners"CFS is not an illness, it's a condition," which means that the underlying causes of ME/CFS could vary widely and that each would have to be treated on its own.

Note:Dr. Kenny De Meirleir was one of the panel members of the CanadianME/CFS Working Case Clinical Definition, Diagnostic & Treatment Protocols, a Consensus Document published in 2003 which can be viewed at http://www.mefmaction.com

Thursday, March 17, 2011

It's been 6 weeks since the decision and I still haven't gotten any paperwork. I don't want to drop my expensive (but useless) Blue Cross till I have Medicare in place, so I checked if I'd fallen through the cracks again (SS once lost my file for 2 years). My lawyer advises that it takes 60-90 days for a written decision.

Sooooooo, don't go cancelling your private insurance or running up the Visa the day you get your decision -- you've still got quite a wait till you see any money.

This is one in a series called "What I'm really thinking", published on a Saturday, every week

in the Guardian Newspaper in the UK.

They invite people to contribute, in time for publication, next Saturday (19 March 2011).

e-mail - weekend@guardian.co.uk

For inclusion next Saturday, letters by post should reach them by first post on Tuesday and may

be edited.

This is my reply

Re: What I'm really thinking: The woman with ME, Guardian, 12 March 2011

We may never have known about Laura Hillenbrand at all, or that she is a very severely affected sufferer of M.E. (Myalgic Encephalomyelitis) but for her success as a writer, firstly, of "Seabiscuit", the novel behind the film about the true story of an undersized racehorse with an awkward gait, whose unexpected victories raised the spirits of a nation during the Great Depression and now, "Unbroken", about the life of athlete and war hero, Louis Zamperini.

In a recent Question and Answer interview (An author escapes from Chronic Fatigue Syndrome, New York Times, 4 February 2011 http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/ - Short link - http://tinyurl.com/4nlp57j), Laura has taken the opportunity to increase knowledge and raise public awareness of this dreadfully disabling illness, with personal experience, which may otherwise have remained within the four walls of her bedroom and of those who have not been able to reach outside them in the way her extraordinary success has allowed.

There is only one point on which she and I significantly differ: Laura, now 43, who has been sick for 24 years since the age of 19, says that she doesn't remember what it is like to feel well. I am 57, have been ill for 23 years but, even after all this time, I can vividly remember what it is like to be healthy, go to work every day, have a full social life and the fair share that everyone deserves, as though it were only yesterday. And I want it (or at least some of it) back - for me and everyone else who has been similarly robbed.

Everyone, of whatever age they were when this awful illness hit them, has lost - or has had stolen from them - a huge chunk of their life, whether childhood, teenage years, career, or sometime the retirement they had earned. With the support of fellow sufferers, like Laura Hillenbrand and some smart academics, I intend to try to stop this thief and perhaps restore some of his ill-gotten gains.

Monday, March 14, 2011

"SOME PEOPLE JUST DON'T WANT TO BE CONFUSED WITH FACTS THAT CONTRADICT THEIR PRECONCEIVED OPINIONS OR PREJUDICES. . . IT IS NOT A QUESTION OF WHO IS RIGHT OR WRONG BUT WHAT IS RIGHT OR WRONG THAT COUNTS." – Geoff Metcalf

In your journey with CFS/fibro, you'll run into many doctors who will insist "there are no objective symptoms" despite you telling them that there *are* objective symptoms. Doctors who will deny the existence of 5000+ research studies showing objective abnormalities. Doctors who are soooooooo determined to call it IAIYH (It's All In Your Head) that they will ignore things that would ordinarily rate further investigation (e.g., one of our activists had a missed case of appendicitis and nearly died because her doctor wrote it off to just more baseless whining).

Just remember that there are those whose thought process is "don't confuse me with facts, my mind is already made up".